| Age range |
Medical and developmental problems |
Care Issues |
Mobility Issues |
| Early years |
Delayed motor milestones
Speech delay common
Learning difficulties common |
|
N/A |
| Age 4-6 around the time of diagnosis |
Unable to run and jump
|
- Daily physiotherapy
- Application of night time splints
- Non-walking splints at night
|
N/A |
| Years after diagnosis – age 4-12 depending on severity |
Increasing mobility problems due to muscle weakness:
- Falls
- Difficulty getting off the floor
- Struggling with the stairs
- Walking slower
- Difficulties climbing in and out of the bath
- Reduced walking distance
Also:
- Risk of injury due to falls
- Risk of joint contractures
- Steroid drug side effects
|
- Daily physiotherapy
- Application of night time splints
- Non-walking splints at night
- Help with climbing into bath/up stairs/lifting from floor
- Wheelchair for long distances
- Behaviour management (steroid side effects)
- Weight management (steroid side effect)
- Extra care after surgery (if required) for joint contractures
|
Walking difficulties present |
| Increasing mobility problems age 4 -12 depending on severity |
Increasing mobility problems due to muscle weakness:
- Unable to climb up/down stairs
- Unable to get up from floor
- Difficulty washing/mobilising round bathroom
- Uses wheelchair for longer distances and at school
- Walking short distances
|
- Daily physiotherapy
- Application of night time splints
- Non-walking splints at night
- Help with mobilising and washing
- Wheelchair daily
- Behaviour management (steroid side effects)
- Weight management (steroid side effect)
- Extra care after surgery (if required) for joint contractures
|
Walking difficulties present |
| Increasing mobility problems age 8 -12 depending on severity |
No outdoor mobility – uses wheelchair
- Unable to climb up/down stairs
- Unable to get up from floor
- Difficulty washing/mobilising round bathroom
- Walking functional distance indoors
|
- Daily physiotherapy
- Application of night time splints
- Non-walking splints at night
- Daytime callipers for exercise
- Help with mobilising and washing
- Behaviour management (steroid side effects)
- Weight management (steroid side effect)
- Extra care after surgery (if required) e.g. scoliosis
|
Increasing mobility problems present |
| 95% by age 12 – fully wheelchair dependent |
Uses wheelchair indoors and outdoors
|
- Daytime callipers for exercise – help to put on and supervision –risk of falls
- Help with transferring
- Help with all aspects of washing – likely to have a hoist
- Likely to need turning at night
- Help with toileting day and night
|
Likely inability to walk |
| Age 12 and over |
Uses wheelchair indoors and outdoors
Increasing weakness of upper limbs and restricted reach due to spinal surgery or spinal jacket
|
- Help with transferring
- Help with all aspects of washing – likely to have a hoist
- Likely to need turning at night
- Help with toileting day and night
|
Inability to walk |
| Age 12 and over increasing weakness of upper limbs and respiratory muscles |
Uses wheelchair indoors and outdoors
Increasing weakness of upper limbs and restricted reach due to spinal surgery or spinal jacket
Respiratory muscle weakness leading to low blood oxygen levels at night and repeated chest infections
|
- Help with transferring
- Help with all aspects of washing – likely to have a hoist
- Turning at night
- Help with toileting day and night
- Help with eating due to restricted reach and lifting or swallowing difficulties
- Gastrostomy feeding
- Night time respiratory support
|
Inability to walk |
